30 Things About My Invisible Illness (You May Not Know!)

….As part of my posts for Invisible Illness Awareness Week, here are…

…30 Things About My Invisible Illness (You May Not Know!)

1. The illness I live with is: Chronic Severe Difficult to Control Asthma, Gluten/Wheat allergy and Migraine.

2. I was diagnosed with it in the year: 2005 (Adult onset version of severe difficult Asthma), 2006, Wheat Allergy and since childhood, aged 6 (Migraine).

3. But I had symptoms since: Mostly throughout my life on and off for both illnesses.

4. The biggest adjustment I’ve had to make is: Not being able to plan things so easily-not knowing what is around the corner.

5. Most people assume that ‘asthma’ is just a blue inhaler and migraine is just a really bad headache!

6. The hardest part about mornings are: My lungs are very congested and I need to cough a lot and require many medications. It takes me so much longer to get ready in the early morning than mid morning!

7. My favourite medical TV show is: Embarrassing Illnesses (Dr Christian Jessen)

8. A gadget I couldn’t live without is: My iPhone

9. The hardest part about nights are: Constantly waking up in the small hours, feeling like I am suffocating and not being able to breathe, and often with a terrible migraine

10. Each day I take 12 different pills.

11. Regarding alternative treatments I have tried several types of homeopathy both for my lungs and headaches, physiotherapy, reflexology and Chinese Herbs.

12. If I had to choose between an invisible illness or visible I would Probably still choose to have an invisible one.

13. Regarding working and career: I used to teach  full time before I became this ill in 2005. I had a lengthy period off sick in 2005-6 and fought tooth and nail to return to work in some capacity in my old job. I had a phased return and then settled on 2.5 days and have managed to increase to 3 days. I work in the same school, and with many of the same people who knew me before I became this disabled by illness. It has been a hard adjustment for myself and them.

14. People would be surprised to know: That I used to run regular half marathons and was very strong and super fit!

15. The hardest thing to accept about my new reality has been: Not being able to play sports/run anymore, although I started doing daily gentle swimming in Jan 2008.

16. Something I never thought I could do with my illness that I did was: Enjoy swimming so much-even in the cold and wet of the winter months!

17. The commercials about my illness are mainly on TV in the USA and involve happy people with lovely happy lifestyles, taking a daily dose of an inhaler and always feeling better. Magazine articles usually show the sufferers as being older people, or children, seldom people my age, (early 40s), trying to battle on with  a severe form of the illness.

18. Some things I really miss doing since I was diagnosed are: Playing my Oboe and riding my bike, and the freedom to do things, spontaneously, as I always have to plan days out and weekends away so meticulously, remembering  all my drugs, nebs, oxygen, and food supplements.

19. It was really hard to have to give up the life I had: fun, carefree, never thinking twice about going out, not worrying about the future.

20. A new hobby I have taken up since my diagnosis is swimming (Jan 2008) and this blog (Jan 2010).

21. If I could have one day of feeling normal again I would leap on a flight taking a day trip to Paris, without having to first arrange paperwork from my GP for all my drugs, nebs and oxygen requirements. I would walk around seeing the sights all day, having a picnic by the Seine, visiting the markets and churches-and fly home again in the evening-never once having to remember to take a tablet, not needing to constantly sit down and rest, not having to do a neb treatment every few hours, to try and fight the breathlessness and not needing to carry my personal oxygen concentrator. And on that wonderful day, I could eat some stinky french cheese and drink a glass of red wine without any risk of my head going ‘bang’ with a stonking migraine. And because I wouldn’t have to worry about my stomach being upset, I wouldn’t have to be constantly panicking about where the toilets were!

If I couldn’t get a quick cheap flight to Paris, I would get out my oboe and play it again, without keeling over trying to blow the thing!

22. My illness has taught me: to live every moment to the full, but to always be compassionate and understanding of others less fortunate in their lives and with their invisible illnesses.

23. Want to know a secret? One thing people say that gets under my skin is: “But she doesn’t look ill”.

24. But I love it when people: talk to me like I am a completely normal person. Because, really, I am!

25. My favorite motto, scripture, quote that gets me through tough times is:Unstoppable at Achieving the Unthinkable: This is really my mantra.

26. When someone is diagnosed I’d like to tell them: To be hungry for information. Learn everything there is to learn about your illness, and never settle for one opinion. Do as the doctors say and find your own routines that work for you. Keep as active as you can, work through the breathlessness and try to keep yourself as ‘in condition’ as you possibly can. Not every person’s version of the illness will be the same. Accept some treatments may not work for you. Investigate all others and all avenues. Read and Learn and above all, Live!

27. Something that has surprised me about living with an illness is: How many people can really empathise with me, how many friends I have made, both in real life and online, and how many things we have all learned from each other, through sharing our illness experiences.

28. The nicest thing someone did for me when I wasn’t feeling well was: to come and sit by my hospital bed for hours when I was truly feeling my worst. She kept watch over me and truly understood what I was going through. She prayed for me. She is now one of my closest friends.

29. I’m involved with Invisible Illness Week because: as somebody who suffers from invisible illness, I feel it is my duty to share my experiences in the hope that others may learn and gain some strength from my experience.

30. The fact that you read this list makes me feel: quite humbled!


10 Responses to 30 Things About My Invisible Illness (You May Not Know!)

  1. Emz says:

    I knew 28! It’s good to make people more aware…and you totally are fun and bubbly on the outside! AND like another mum to me and others I’m sure!Xxxx

  2. Aww, cute! And I didn’t know I’d ever told you about number 28! x

  3. Elisheva says:

    Nice list, completely normal person! 😛

  4. Mike says:

    Have just come across your blog by chance.Glenys and I having only met you and Julian this Easter in Palm Springs,were aware of your circumstances but not your history. Having read these pages and without wishing to appear patronising, I am humbled by your resilience, determination and demeanour. We know of your exemplary zest for life and experiences and we hope it is not too long before our paths cross again.

    • Hey, Mike and Glenys-how bizarre you should bump into me again here! Lovely to have you stop by. Are you involved in Invisible Illness Week yourselves?
      Keep in touch…..please, love Susannah, and Julian! xx

  5. kirsten says:

    I knew alot but reading it hits home alot more you are an inspiration for me. I to yearn to go back to my woodwind intrument but for me its the clarinet -i hated all the practice when younger but really miss just picking it up and playing now. I certainly can relate to many others too .
    Take care xxx

    • Hi Kirsten, thanks for stopping by here! I know how much you have to deal with too-far more than your share-and with a busy family life. Didn’t know you’d played the Clarinet-happy memories, I hope, apart from the practising!
      Take Care and do pop back here from time to time,
      Sus x

  6. Lisa Copen says:

    I enjoyed reading through some of your blog and your profile and getting to know you a bit. Thank you so much for posting about Invisible Illness Awareness Week.

  7. It is still possible to travel to Paris. I went 3 years ago when I was on O2 and using a bi-pap in the evening. Also, borrowed a wheelchair to get push around town! It is great because you get the “discount” admission price and always pass-by the long line up. You just need to plan your trip to ensure all goes smoothly!

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